I had a temporal artery biopsy last Friday at the RD&E (Exeter) with two lovely surgeons. They removed just over 2cm from the 'bumpy' area just above my right eyebrow (photo in previous post). They said if they were betting they would say positive but obviously it was necessary to wait for the 'official' result. Well the rheumatologist rang today (left message with husband) to say it was positive. He's ringing me to discuss plan tomorrow morning.
So while I didn't want GCA, I am pleased to have an answer. (I didn't like the alternatives in my mind of tumour or imagination.) Now to read up about treatment plans etc.
Thank you to this wonderful forum for pushing me to fight at A&E and not ignore my symptoms. I suspect you've helped save my eyesight!
Will update my profile and post more when I've had the consult tomorrow.
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DogAgilityObsessed
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Those surgeons are keepers!!! And as a result no-one can claim it never was GCA,
It would be nice if someone would write your case up - PMR patient on pred develops GCA symptoms (well, WE recognised it as potentially GCA even if the ED didn't) despite you being on pred (there are too many doctors who think ANY dose of pred protects you) and it took 3 weeks for them to work it out. Really not good enough is it?
I've had a phone consult with my Rheumatologist. The plan is to remain on 40mg pred for another 3-4 weeks, then 30mg for 2 weeks, 25mg for two then 20mg. Bloods to be done in January and possibly leflunomide as steroid sparing agent. He suggested I could read up about it but mentioned it as being Professor Dasgupta's "go to drug" although it looks pretty scary to me.
I've lived with PMR for three years but am finding this all a bit overwhelming. I wondered if those knowledgable people here could point me in the direction of the best sources of further information.
To be honest I would be holding off adding in another drug until you know how your GCA is behaving.
One article in 2012 does state following -
‘It may be a useful adjunctive agent in difficult-to-treat GCA and PMR. Prospective randomised controlled trials of Leflunomide in both GCA and PMR are now required.’
But it does quote “difficult to treat” - so wait and see - same article does also say at 2 year period patients have issues.
"but mentioned it as being Professor Dasgupta's "go to drug""
for PMR maybe ...
Dasgupta's paper in 2012 that DL mentions does indeed say trials are required - but neither he nor anyone else did much afterwards in the intervening years although I believe a group in The Netherlands started a study before Covid which then ground to a halt.
There are several very small studies in the literature - all of them claim to find a benefit with leflunomide. But if he was that convinced of its value - wouldn't he have made some attempt to set up a better study than the retrospective one he published in 2018?
It is a blow to get GCA on top of PMR and when you were feeling better. However on the plus side, you know what it is. Also, in my experience, GCA is easier to deal with than PMR, once the symptoms are under control you can more or less forget about them. Exercise is easier too, so when you are off the high levels of pred, you should be able to go back to the fitness routine you mentioned you were starting. You've had a very stressful time, so it would be worth looking into some ways of relaxing like yoga or meditation?
I don't know much about steroid sparers, but tocilizumab seems to be used more for GCA.
TCZ isn't approved for use in PMR anywhere in the world although it is used, mainly in the USA, for difficult cases. That's why it is more used for GCA. I'm on it for PMR but even here in Italy it isn't common.
As someone with GCA, diagnosed four+ years ago....I'm so happy you got the biopsy and know what you are dealing with. Thank heaven for this forum...I was lost. I say, because of a lack of awareness and knowledge in Maine, USA, I had all the symptoms and it took 10 months to get my diagnosis and treatment started. So happy for you💞
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Likely GCA but not yet diagnosed and scared to death!
Pred head?
Update from 5 months ago and new question
Feel like crying...
First Rheumatology Hospital Appointment - UPDATE
